tag:blogger.com,1999:blog-4826023149139426251.comments2018-12-19T06:32:11.252+00:00AntiCancerPan Pantziarkanoreply@blogger.comBlogger96125tag:blogger.com,1999:blog-4826023149139426251.post-65786673935369155492016-08-02T18:39:57.022+01:002016-08-02T18:39:57.022+01:00Kate W. Phone Dicksons Chemist in Glasgow Tel.014...Kate W. Phone Dicksons Chemist in Glasgow Tel.0141 404 6545. They are very helpful and will explain everything to you. Your dad would probably start with liquid form LDN at about 1.5ml dose - gradually increasing. Good luck chrisnoreply@blogger.comtag:blogger.com,1999:blog-4826023149139426251.post-66907329364463083542016-05-14T08:19:24.290+01:002016-05-14T08:19:24.290+01:00My father has throat cancer and is having radio th...My father has throat cancer and is having radio therapy treatment now 14/04/2016 He&#39;s just had his 9th out of 30!? His throat is beginning to hurt now and at 82 I&#39;m not sure what the outcome will be !? He gets depressed because he&#39;s nil by mouth and the whole experience to date has been quite traumatic ! I want to introduce him to LDN can anyone advise me what my next step is please?? We live in UK near ManchesterKate Whttps://www.blogger.com/profile/02037193745877073361noreply@blogger.comtag:blogger.com,1999:blog-4826023149139426251.post-62946219149761647532016-05-11T02:33:23.024+01:002016-05-11T02:33:23.024+01:00Hi Anonymous, Thank you for sharing your story. I ...Hi Anonymous, Thank you for sharing your story. I just started taking LDN and am interested in ALA also. How many IV treatments did you do? I know people travel to see him for treatment but financially very difficult for me right now and can&#39;t yet find anyone local yet who does the IV ALA protocol. thanks for any help you can offer, cindyAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-4826023149139426251.post-84946244763956845322016-01-28T23:37:38.785+00:002016-01-28T23:37:38.785+00:00I&#39;m a patient of Dr Berkson for bladder cancer...I&#39;m a patient of Dr Berkson for bladder cancer. He made the point that IV ALA is *much* more effective than oral, because ~98% of oral ALA is metabolized by the liver and does not make it to the body&#39;s cells. Also, ALA can cause mitochondria to explode in too high doses, per Dr Berkson, so you have to be careful with dosage. Having said that, he did prescribe 300 mg of European Sourced ALA twice daily taken with a mega B Complex multivitamin. His recommended source is Metabolic Maintenance for the capsules, easily purchased through Amazon dot com. Hope this is helpful. I am also on LDN. My aggressive high grade stage 1 bladder cancer was removed and has not recurred over two years. You can find other integrative MD&#39;s who are willing to follow Berkson&#39;s IV protocol (he also had me on high dose IV vitamin C at the clinic)-- look up those doctors on the American College for the Advancement of Medicine web site.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4826023149139426251.post-39393617958381820552015-08-31T13:18:03.661+01:002015-08-31T13:18:03.661+01:00That was something new about sarcoma. I have read...That was something new about sarcoma. I have read a lot about <a href="http://sarcomaoncology.com/soft-tissue-cancer/" rel="nofollow">Soft Tissue Sarcoma Treatment</a>. Thanks for sharingMelissa Cruzhttps://www.blogger.com/profile/01256431399004128657noreply@blogger.comtag:blogger.com,1999:blog-4826023149139426251.post-6850979071186486182014-12-18T09:00:52.362+00:002014-12-18T09:00:52.362+00:00Sorry, the URL for the article &quot;When Doctors ...Sorry, the URL for the article &quot;When Doctors Throw their Hands in the Air&quot; mentioned above didn&#39;t show up so here it is:<br />Http://is.gd/Saatchi<br />Angelhttp://is.gd/Saatchinoreply@blogger.comtag:blogger.com,1999:blog-4826023149139426251.post-1228213258630034232014-12-17T20:26:29.129+00:002014-12-17T20:26:29.129+00:00&quot;I work with three different charities that s...&quot;I work with three different charities that support patients with late stage cancers. The problem crops up in patients from all three organisations - the fact that it doesn&#39;t show up in official sources is puzzling and is perhaps symptomatic of the institutional cultures I mentioned.&quot;<br /><br />This chasm between the way Drs behave and the way they are reported as behaving is the subject of my article about the Saatchi Bill, URL attached. <br /><br />If you downgrade everything not said by a Dr to the level of &quot;anecdote&quot;, evidence of all such embarrassing fears can easily be made to disappear.<br /><br />Then, if you point that out, it&#39;s &quot;oh it&#39;s just education&quot;. <br /><br />So it&#39;s a lack of education that makes Drs THINK there are legal dangers for them in prescribing off-label? <br /><br />Such an unhelpful situation as Drs feeling unable to prescribe off-label treatments to people with no other option just because they are clueless about the law is then just glossed over.<br /><br />The lack of visibility of the problem isn&#39;t that puzzling when you realise that it IS the problem.<br /><br />Sadly, the &quot;debate&quot; is more like a mis-matched game of pool in which you can pick any ball as long as it&#39;s the red one. <br /><br />Another symptom of the same problem.<br /><br />Angelhttp://is.gd/Saatchinoreply@blogger.comtag:blogger.com,1999:blog-4826023149139426251.post-48205284800219981892014-12-17T14:02:01.749+00:002014-12-17T14:02:01.749+00:00&quot;I can only presume you don&#39;t actually kn...&quot;I can only presume you don&#39;t actually know what &quot;data&quot; is, if you think a voluntary Excel sheet of random unstandardised uncontrolled experiments is it.&quot;<br /><br />Thank you for that unwarranted insult. I guess hiding as an Anonymous poster has certain advantages...<br /><br />Pan Pantziarkahttps://www.blogger.com/profile/06402257217928470486noreply@blogger.comtag:blogger.com,1999:blog-4826023149139426251.post-47783675740876758442014-12-17T13:33:59.411+00:002014-12-17T13:33:59.411+00:00Allowing untested treatments to be used on despera...Allowing untested treatments to be used on desperate patients is inviting quacks to take advantage. That&#39;s why quacks love this Bill so much. Doctors are already, and DO, use non standard treatments with no fear of litigation. All this Bill does is remove vital patient safety mechanisms. It gives NO data at all. I can only presume you don&#39;t actually know what &quot;data&quot; is, if you think a voluntary Excel sheet of random unstandardised uncontrolled experiments is it. To suggest that ANYONE has said it will mean the end of clinical trials is utterly dishonest. It will however, as Dr Wollaston ACTUALLY said, undermine recruitment to trials. That will make the amazing progress we have already made in treating cancer far more difficult in future. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4826023149139426251.post-87545610285468667412014-12-17T12:43:39.622+00:002014-12-17T12:43:39.622+00:00What &#39;controlled and scientific manner&#39; do...What &#39;controlled and scientific manner&#39; does the Bill require?<br /><br />The Bill - as it currently stands - will not improve safety or knowledge. There is, as yet, no requirement to record details of any treatment. But even if it is mandated in some new version of the Bill somewhere down the line (and, given the apparent reluctance of the Bill&#39;s PR team to take on board previous criticisms, we need to wait to see what any such amendment actually says), recording of individual stories about individual patients will tell us virtually nothing about a treatment and will not drive innovation.Alan Hennesshttp://www.stopthesaatchibill.co.uk/noreply@blogger.comtag:blogger.com,1999:blog-4826023149139426251.post-40156930541975902712014-12-17T12:37:52.721+00:002014-12-17T12:37:52.721+00:00Pan said:
&quot;Killing the Bill would send out a...Pan said:<br /><br />&quot;Killing the Bill would send out a very negative message to the medical community and would risk further entrenching the status quo.&quot;<br /><br />You - or at least the Bill&#39;s PR team - have first to show that the status quo can be improved (it can, but not by this Bill, of course) and that this Bill will do that and do less harm than good. This has not (yet) been demonstrated.Alan Hennesshttp://www.stopthesaatchibill.co.uk/noreply@blogger.comtag:blogger.com,1999:blog-4826023149139426251.post-7842914402098607662014-12-17T12:36:48.923+00:002014-12-17T12:36:48.923+00:00I do not know if it is intentional or not, but it ...I do not know if it is intentional or not, but it is without question that risk is being transfered from the Pharma companies and doctors onto patients. The Bill is explicitly trying to remove the right of patients to ask courts to look at the decisions made by doctors. As such, the risk of the treatment falls firmly on the patient.Andy Lewishttp://ww.quackometer.netnoreply@blogger.comtag:blogger.com,1999:blog-4826023149139426251.post-39413300596858379762014-12-17T12:34:22.719+00:002014-12-17T12:34:22.719+00:00What&#39;s the evidence that legislation is the be...What&#39;s the evidence that legislation is the best way to drive institutional change or even that it will be effective in doing so?<br /><br />And what other avenues have been explored before pushing a Bill through Parliament that will drastically change the law, encourage irresponsible experimentation and remove tried and tested patient protections?Alan Hennesshttp://www.stopthesaatchibill.co.uk/noreply@blogger.comtag:blogger.com,1999:blog-4826023149139426251.post-41049892115921957582014-12-17T12:26:59.905+00:002014-12-17T12:26:59.905+00:00I&#39;m glad that we agree that we want a culture ...I&#39;m glad that we agree that we want a culture where doctors are not afraid to provide such help to patients. By the same token, if the Bill is poorly constructed then the thing to do is help further amend and improve it. Killing the Bill would send out a very negative message to the medical community and would risk further entrenching the status quo.Pan Pantziarkahttps://www.blogger.com/profile/06402257217928470486noreply@blogger.comtag:blogger.com,1999:blog-4826023149139426251.post-56991308300682696452014-12-17T12:24:15.255+00:002014-12-17T12:24:15.255+00:00Because very often legislation can help drive inst...Because very often legislation can help drive institutional change. That is not to say that there aren&#39;t other avenues to be explored in helping this process along.Pan Pantziarkahttps://www.blogger.com/profile/06402257217928470486noreply@blogger.comtag:blogger.com,1999:blog-4826023149139426251.post-35864231627048234332014-12-17T12:17:42.225+00:002014-12-17T12:17:42.225+00:00How exactly is this post putting patients at risk?...How exactly is this post putting patients at risk? What is unforgivable is denying patients a chance to try non-standard treatments in a controlled and scientific manner. It&#39;s this denial that drives vulnerable patients into the hands of quacks selling miracle cures over the internet. Far from putting patients at risk, the Bill will improve safety by giving us the data to identify what works and what doesn&#39;t - ultimately leading to the prospective clinical trials which we need.Pan Pantziarkahttps://www.blogger.com/profile/06402257217928470486noreply@blogger.comtag:blogger.com,1999:blog-4826023149139426251.post-50220708485642022942014-12-17T11:04:15.995+00:002014-12-17T11:04:15.995+00:00Wow, this post is yet another example of the misin...Wow, this post is yet another example of the misinformation being peddled by the Saatchi team and their misinformed supporters.You are putting vulnerable patients at risk. Unforgivable. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4826023149139426251.post-28554510088706942722014-12-17T09:42:06.833+00:002014-12-17T09:42:06.833+00:00There is some evidence that the r-ALA form is more...There is some evidence that the r-ALA form is more effective than the s-ALA form. A good recent review of the evidence is this paper: <br /><br />http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4124142/<br /><br /><br /><br />Pan Pantziarkahttps://www.blogger.com/profile/06402257217928470486noreply@blogger.comtag:blogger.com,1999:blog-4826023149139426251.post-42668123737274086732014-12-17T09:02:53.659+00:002014-12-17T09:02:53.659+00:00There are different types of ALA do you know which...There are different types of ALA do you know which type is the right one to use?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4826023149139426251.post-30941163995970682102014-12-16T17:38:17.007+00:002014-12-16T17:38:17.007+00:00Pan said:
&quot;There is a problem of institution...Pan said:<br /><br />&quot;There is a problem of institutional culture at work here as well...The reasons are complex but are not to do with lack of evidence - they are to do with stepping out of the institutional comfort zone and taking a different route.&quot;<br /><br />So, to do with culture rather than fear of litigation?<br /><br />&quot;The Bill sends a clear signal that this is legally OK to do and so encourages doctors to take the steps that they can do now but chose not to.&quot;<br /><br />It is legally OK to do that now and there are safeguards in place to protect patients. However, if doctors are not aware of the current legal landscape surrounding the provision of unlicensed and/or untested treatments, why do you believe it is necessary to introduce a new law to educate or encourage them rather than, say, providing information and guidance?Alan Hennesshttp://www.stopthesaatchibill.co.uk/noreply@blogger.comtag:blogger.com,1999:blog-4826023149139426251.post-39712085379429442582014-12-16T17:27:34.494+00:002014-12-16T17:27:34.494+00:00I agree about the database, although I will reserv...I agree about the database, although I will reserve judgment until I see that reporting cases to it is compulsory. As those above have noted, that is not currently the case.<br /><br />But I guess that we&#39;ll have to agree to disagree about the culture. The 100 eminent oncologists who wrote to The Times also felt that there was no issue there. But where we agree is that the culture SHOULD be one where doctors are unafraid to provide such help to patients.<br /><br />But the elephant in the room is the Bill&#39;s unintended consequences. It is poorly constructed, could lead to more litigation and is not the answer even if we accept that the problem that it identifies is there.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4826023149139426251.post-44054774589387572422014-12-16T17:20:16.565+00:002014-12-16T17:20:16.565+00:00I work with three different charities that support...I work with three different charities that support patients with late stage cancers. The problem crops up in patients from all three organisations - the fact that it doesn&#39;t show up in official sources is puzzling and is perhaps symptomatic of the institutional cultures I mentioned.<br /><br />Changing such cultures is hard - perhaps the BMA suggeston would be better, but the fact is that they are only discussing it because of the Bill. Furthermore, a legal change can help push that cultural change along.<br /><br />Finally, I would suggest the central patient database is a hugely important spin-off that promises a major advance in medicine.Pan Pantziarkahttps://www.blogger.com/profile/06402257217928470486noreply@blogger.comtag:blogger.com,1999:blog-4826023149139426251.post-15474568893419843912014-12-16T17:10:23.278+00:002014-12-16T17:10:23.278+00:00Hi Pan
Thanks for replying. The problem is that ...Hi Pan<br /><br />Thanks for replying. The problem is that none of the research bodies (Wellcome, MRC, Cancer Reserch UK), medical protection societies (MDU, MPS) or either the GMC or BMA managed to find evidence of what you are saying. Nor have I read anything from anyone connected with the Bill that proves that this institutional culture issue is inhibiting doctors from providing what they want to provide.<br /><br />Even if there was, the fact is that the law does not actually inhibit them. If a patient had a form of cancer for which the standard procedure provided no hope, and after discussion with her the doctor provided something &#39;innovative&#39;, that&#39;s not negligence. The patient, should they sue in such circumstances, has a zero chance of success. Remember, nobody has been able to provide a single example of a doctor being sued for innovating.<br /><br />Given this, the BMA&#39;s suggestion that educating doctors to change the culture is better than legislation is sensible, wouldn&#39;t you agree?<br /><br />In particular since this Bill has a number of unintended consequences and vague language that would mean (as some of the bodies I listed above argue) more rather than less litigation.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4826023149139426251.post-56308096318202522332014-12-16T17:01:34.432+00:002014-12-16T17:01:34.432+00:00@Anonymous - There is a problem of institutional c...@Anonymous - There is a problem of institutional culture at work here as well. I know from direct personal experience with my own family, and with families that I have since supported that very often doctors do not prescribe the non-standard treatments that they can prescribe. The reasons are complex but are not to do with lack of evidence - they are to do with stepping out of the institutional comfort zone and taking a different route. The Bill sends a clear signal that this is legally OK to do and so encourages doctors to take the steps that they can do now but chose not to.Pan Pantziarkahttps://www.blogger.com/profile/06402257217928470486noreply@blogger.comtag:blogger.com,1999:blog-4826023149139426251.post-27115338395088706442014-12-16T16:46:03.004+00:002014-12-16T16:46:03.004+00:00Dominic,
you said: &quot;You are right to raise ...Dominic, <br /><br />you said: &quot;You are right to raise the issue of trials and to pose the question as to what happens to patients, with rare diseases, for whom the evidence base is thin and for whom standard treatment means only death. In their case, when there are no trials, objectors to the Bill have no clear nor convincing answer.&quot;<br /><br />I am an objector to the Bill, and I have an answer: they will use unlicensed drugs because as you will know they can already currently do that.<br /><br />The Bill does not allow doctors access to any drugs that they cannot currently access, funding to buy/use them that is not currently already in existence and it does not allow them to provide ANY procedure that they cannot currently provide.<br /><br />Am I wrong?Anonymousnoreply@blogger.com